Saturday, June 30th

We came home with Garak last night.   Our options were to leave the ICU and be transferred to either the regular infant unit at Primary's or Riverton Hospital, or we could take him home.   There was no telling how long Garak had and we had been away from home for too long.  On the advice of the Child Life counselors, we spoke with each child and asked them how they would feel if we brought Garak home to them as he died.   Tregan was very happy, while the other boys agreed this was what they wanted, but you could tell it made them nervous.

Before leaving we tried our hardest to get all the information we could to paint a picture of our days to come.    There were all sort of theories describing different ways he would pass.   Nothing seemed cruel, he is not in pain, and we can administer Dilaudid as needed to comfort him when he appears in distress.   The downside of the narcotic is that it slows his breathing way down.  Each time it's administered, Garak appears to go somewhere else.

We left the hospital with the POLST order (Physician Order for Life Sustaining Treatment), which we need in case paramedics see Garak in distress.  They say sometimes neighbors call 911, and if this order is not presented, they are required to resuscitate.

We were told that we didn't have to use a car seat coming home.  I am assuming the POLST Order would work as proof we deserve special treatment.   It's too bad Garak didn't appreciate being in the front seat in his mother's arms.   I was ready to flip the bird to anyone judging us.

Not until this morning, and after having spoken with tens of people with experience, have we agreed to not feed Garak.   As it ways, he still hadn't been fed since the tube was pulled, and he still seems content.   His hunger sense is broken.   That's a blessing.  

There are a lot of ways of intervening when Garak is appearing in distress.  It's difficult to know if providing some assistance is just comforting him, or prolonging his suffering.  Do you clear some fluids from his mouth, or let the breathing difficulty tire him out?   Jailyn has agreed to permanently remove feedings if I don't mind that she clears his mouth if it's bad.   We were provided a little medical vacuum, and we also have oxygen in case we can't go through with this.

Last night was pleasant, he slept in our bed through the night without complaint.   He constantly makes a cute snoring sound, letting us know he still likes it here.

Karen Miller made a hair appointment house call today as we would like to get family pictures today and Jailyn is not going to be leaving the house anytime soon.   I believe Michelle Perry moved back to Utah specifically so she could take our picture.  It's the least she could do.  While Karen continued working on Jailyn's hair, Jailyn administered the Dilaudid while Stephanie James held Garak.   Some pretty serious multi-tasking.  I must have been busy.  After getting the narcotic, he slowed his breathing way down.   As it is, his breathing and heart rate have already slowed down.   His hands and feet feel colder, confirmation he is getting tired.    The hospice nurse believes we have hours to maybe days left.   We have an hour until the photo shoot.   We wonder if we should move it up.

Thursday, June 28th - Friday, June 29th

At the time of this writing, Garak is still with us.  He can't make up his mind.

We were brought into a small room with soft cushy chairs.   The Doctor, NPs, Nurse and the Counselor were in attendance.    It's been less than a day, but I can't recall a single quote from that meeting.  Every moment afterwards have been an emotional trainwreck, blocking my memory.   The outcome in this meeting was us giving our consent to let him go.    They let us linger in that office, as we weren't fit to for public display.

We called Jailyn's parents to ask that they bring the kids up for a final goodbye.   We also invited Garak's second-mom Stephanie.  Jailyn's sisters, parents and brother in-laws also said goodbye.

Each brother took turns holding him.  The hospital's Child Life counselors helped us make color stamps of each brother's foot, next to a stamp of Garak's swollen fat piggie foot.   They also made a plaster cast of Garak's hand.   The boys were then taken by the Counselors who again spoke with each one.   They wrote messages for Garak on balloons then went to the hospital roof to let them go.   The boys walked back in and kissed Garak on the head and said goodbye one last time.

I handed Garak back to his mom.  She rocked him.  Our Bishop and a Councilor arrived.   She continued her time with him as everyone waited for her word when to begin.   During the wait, our nurse assisted cutting off some of his red hair for keepsake.    This paragraph is short, but it cannot describe the feelings, thoughts, emotions of making a decision to end your child's life.   He seems fine, he's just napping.   He is just napping, but for a week.  He is finally relaxed and not complaining.  He's still our big blued-eyed little Gare-Bear.   I feel sorry for myself more than I feel sad for him.   I think of my feelings when I cry.  I feel selfish.   I have to remember that he may never wake up again.  He may already be gone, and who am I to force him to stay.   

It took another hour for Jailyn to say ok.   It was about 5:30pm when I informed the nurse who paged his team.   The Doctor, NP, and Councilor were on hand as the Respiratory Tech and Nurse removed his breathing tube.   Jailyn held him and rocked him as he gasped for air on his own.   The sounds he made were frightening.  It was like a fish out of water.   There was no reason to believe we were not watching our Son die right then.  Everyone was crying as he gagged.   He won the struggle, and  relaxed.   They told us he could give in immediately, or an hour, or a day, or weeks.   Now we wait.  

The medical team left the room, and Jailyn continued rocking the tired guy.   We took pictures of his face as we hadn't seen it in a week without tape over his mouth.    Jailyn washed him and discovered his first two teeth have come through.   It took about an hour to calm down.   One moment your child appears to be dying, struggling, but the next moment he is just sleeping calmly.    

Jailyn sang to him and rocked him as the Bishopric waited in the hallway.   We were delivered a bed/chair and Jailyn laid with him.   Jailyn resisted eating, but I was happy to have the Bishopric provided BK.  Jailyn fell asleep, and the Bishopric entertained my caffeine fueled tangents until they left at about 2am.

Garak would occasionally start making a congested sound.  He aspirates, has a bunch of fluid in his lungs and he can't cough.  He starts breathing rapidly.  We don't know if this is how it will go.   At some point I stopped waking up to those sounds.   Jailyn would often wake to see to discover he was still enjoying sleeping with her as much as she enjoyed this rare experience.   He wasn't crying, he was peaceful and comfortable in her arms.  

It is now 10am.   Garak had a hand-bath and his eyes were open for the first time in a week.   It was a happy moment, but contributes to our confusion.   If he were older you would see the change he has undergone and be assured he is not well.   With him already being under-developed and still an infant, he still looks like an infant, just really tired.

The hospital is going to move us out of the ICU.    I hope we still get a private room.   Our other option is to bring him home.   Jailyn and I are not on the same page.   I worry how the boys will react to seeing him again, and gaining the wrong expectation, and having again say goodbye.

He hasn't been fed since 6pm yesterday.   He hasn't complained one bit.   The old Garak wouldn't let you walk away without something in his mouth.   Do we start feeding him again, giving him more strength, prolonging the inevitable?   We want him comfortable, but I am not sure if he even cares for food anymore.  It sounds cruel to not feed him, but its also cruel to endure more choking episodes.

(older picture)

Wednesday, June 27th

Today has been the hardest day yet.  They ran another MRI to look for brain damage.   The first MRI was ran too soon to see the true affect of this incident.  With the first one, we heard the result almost in passing as nothing was found, and thus didn't warrant any conversion.  This time was different.  I hear they want to speak about the results, which in itself is a bad clue.  Then when I walk into Garak's room I see the crisis counselor waiting with the Doctor. The NP and Nurse are also present and they are scrambling to find chairs, another ominous clue.   The Doctor explains they found some massive evidence his brain went without oxygen/blood-flow.  He tells us he will never be the same.
He also points is to the EEG readings and explains that with the amount of sedative that they have stopped administering, Garak should no longer have the flat readings he's producing.  His brain just isn't firing.  He still has some strong drugs in his system that can relax the EEG a bit, but not to the degree we are seeing.
Neurology estimates his brain lacked the right blood-flow for about 30 minutes.  It's a bit of a mystery why only his brain & liver have been affected. 

Despite being on a respirator, they let Jailyn hold him the rest of the day.  The boys came up and were explained that Garak will be going to heaven soon.  Kyler asked why a lot, then said "goodbye Garak."

Now has come the time we are supposed to make the impossible decision.

Tuesday, June 26th

This morning when I walked in the PICU I noticed there were a lot of people around Garak's crib. He was in a 20 minute seizure and everyone was trying to get him to come out of it. After a lot of Ativan and a loading dose of Phenabarbital the seizure finally subsided. Shortly after, neurology came up and looked at the EEG. The attending doctors and the neurologist were very confused regarding his actions and the EEG. His actions were very rhythmatic, he had a jerking backward action which happened five times lasting anywhere from two to twenty-two minutes. However, the EEG did not show elevated spikes which would be consistent of a seizure. So, the theory is that he may be so sedated that the sedation meds are covering up the EEG or that his body is reacting to the meds. At this point that are not sure, so the plan is to continually decrease the meds and get his phenabarbital level (which is 50) down, so they can see how he truely acts on his own without any meds. Regarding his liver, the liver enzyme test keeps getting higher. Today the numbers were 6000 and 7000. This is very concerning to them, but they are hoping it will eventually peak and drop. This enzyme in the blood is the indication that the Liver was damaged. It's not an indicator of liver failure, unless it doesn't start to go down soon. They sent out at least 30 labs today for all different types of disorders. These came from the handful of departments that have meant with us and helping to figure out Garak's issues. Most all of these are extremely rare disorders, but they feel at this point whatever he has is something very rare. There is a theory about a disorder that he was tested for yesterday. The result came back very high, but is not conclusive yet. The disorder is HLH - Hemophagocytic Lymphohistiocytosis. A quick summary of this disorder is that he has too many white-blood cells that have accumulated in the tissue of organs like the liver, spleen, spinal cord. These cells hang out waiting for an infection, but in this case, too many have hung out and they're affecting the organ(s). While they said his HLH result was way high, they said his Sodium level changes don't quite match that theory. Hematologist/Oncologist came in to talk to us today about this disorder and what it means. They will be sending off test for this, but they will take a couple weeks to get back. Until then, there is another test they can run from his bone marrow that can tell us if he has this disorder, however, if this comes back normal it will not rule this disorder out. They are planning on taking bone marrow from his nip tomorrow. He also has a MRI scheduled for tomorrow morning. Since they fear the lack of oxygen caused severe brain damage, they are doing another MRI tomorrow to look at his brain again. We were told that oxygen damage to the brain sometimes does not reveal itself the day it happens, but after 2-3 days (which tomorrow will be the 5th day) it for sure will reveal itself. We are praying this comes back normal!!

Monday, June 25th

Monday morning they had a shift change of doctors and today's doctor, Dr. Bennett, seemed a lot more positive then Dr. Chan (doctor from Saturday and Sunday). Dr. Bennett brought in a lot more new ideas and new things they could test for. He wanted to give us hope, not false hope, but a little hope. He said that Garak is in critical condition, his situation and all the complications he is having are life threatening, but he is optimistic that he can possibly recover from everything. This was a breath of fresh air and we welcomed the positive attitude. Today they send it many many labs, too many to even keep track of, but we are hoping things will start to improve soon. Dr. Bennett thought it was very worthwhile to involve some of the other departments besides the PICU and neurology. So today we saw a handful of other specialists. Infection dept, genetics dept, liver team and the pediatric surgeons all came to look in on him. They all are working on his case and bring to life some of their own theories as to what is going on. Each department has requested labs on different type of things so we once again we have to just wait for labs to return. Tomorrow they plan on weaning him off some of the sedation meds to see how is acts. So we are very hopeful that tomorrow will be a really good day for him!

Sunday, June 24th

I have felt like we never receive good news, but Sunday morning was the worse news we have yet to receive. I always wondered how doctors break the news that there isn't anything more they can do for your child, Sunday morning I found out. The doctor was extremely calm and basically told us that within the next few days we would have to make some extremely hard decisions, ones that no parents should ever have to make. We were told that they believed Garak's liver was failing and on top of that, they believed Garak had suffered severe brain damage due to lack of oxygen. We knew that his liver was having issues. The liver enzyme levels were elevated to 500, normal is 100. We also knew that his platelets continued to drop, the lowest was in the 30's after two bags of plasma he went up to the high 60's. After two additional bags it was in the 90's. His coags and ffp also continue to drop as well. The coag (coagulation) is blood clotting, the ffp is the time it takes the blood to clott. The brain damage came by surprise to us. Since the MRI came back normal the day before we did not think he suffered any brain damage. Unfortunately, throughout the night Garak continued to do neuro posturing. Small movements with his arms and legs that are not normal, especially being as sedated as he was. After receiving this type of news, your mind races to things you should have done, things you didn't do, things you want to do. To say the least, this was the worst day of my life and it was just going to get harder. We decided we needed to tell the boys so that it did not come as a shock to them. This was horrible.... all the boys digested this information in their own way, but they all cried a lot.

Saturday, June 23rd

Saturday morning a little after 6am I was awoken by Garak sounding like he was gagging or trying to throw up. With the neesan, I knew this was a bad sound. Immediately, I realized I had laid him down in his crib 5 1/2 hours earlier, since he has never slept for more than two hours on his own, I knew something was wrong. When I took him out of his crib his eyes were rolled back in his head, he was lethargic, very limp, not breathing well and his skin was on fire. Since he had been running the high fever for basically 3 weeks I knew his temperature was extremely high. I took his temperature rectally, 105, 106, 107, 108, at that point I did not even wait for the temperature to stop, we grabbed the oxygen tank, hooked Garak up to the oxygen and speed to the Riverton's Hospital ER. Within a minute of arriving in the ER at least a dozen people were hooking him up to every type of medical equipment in the room. When we arrived his oxygen had de-satted to high 40's to low 50's, and his blood pressure was 57/22. The respiratory technician pulled a oxygen mask and tried to get is oxygen stat up, but no matter how high they turned the oxygen up they could not get is oxygen stat above 60 (normal is 90-100). At this point they decided to put an oral intubation in him, which means they placed a tube into his lung to help him breathe. They also tried to put in an IV to help give him fluids and meds, but they could not, so they put in an I/O (IV through his bone marrow). They drew a lot of blood and started the works on him. It was clear that after a half hour whatever was happening to him was extremely life threatening, they decided to life flight him to Primary Children's PICU (Pediatric ICU) in Salt Lake. Once he arrived at Primary's everyone realized he was in a very long seizure. At this point we knew it had started at 6am (possibly earlier). By this time it was 9:30am so it had been going on for at least 3 1/2 hours. They gave him Versed which also has an amnesia property to it to help him forget about everything. They also gave him Ativan which is another sedating medicine. Unfortunately, neither of these meds stopped the seizure so the gave him a bolus of Keppra which did not stop it either. They then took him down for CT scan on his brain, an MRI and EEG. By 12:30pm the seizure finally stopped. The CT scan and MRI both came back normal, the EEG showed the seizure. The doctors at Primary's also did a LOT of blood work, but they are not sure what is causing the high fever. That evening the EEG looked good, the fever was down to 103.6 and he remained sedated as they looked for an infection.